My Life With Secondary-Progressive MS: Sick and Tired....
....of being sick and tired.
As usual, summer has hit and I am struck by the MonSter. It is different this time, though. I didn't think it would be. I thought when my MS morphed to secondary-progressive it basically meant no more relapses and a steady progression of the disease. I didn't realize how much worse it was going to be. The lack of information on this is very depressing. There's a plethora of websites, books and other resources on R&R MS. But for SP? I'm finding very little. Literally, a paragraph or two. There's GOT to be more to it than that...and I think I'm beginning to realize that there IS more to it than that.
I am so very, very tired. The kind of tired where your muscles ache and burn and you can feel it in your bones. It reminds me of the time when I, in a moment of pure madness, decided to walk the bike trail from Xenia to Yellow Springs in Ohio. All while pushing my son in his baby stroller! When I finally got to the cafe, I felt like I had been walking for years. And that's what this feels like: like I've been walking for years. Like I walked from Xenia to Yellow Springs again, just this morning.
On top of being tired, I am also struck with weakness. My legs wobble when I walk. They shake, visibly. The entire leg, not just the calf like I am used to, but all the way up to my thigh. I feel like I'm auditioning for an Elvis tribute band every time I try to walk down the stairs. And walking up the stairs? It's taking forever. I feel as if I am literally pulling myself up by the banister. I find myself avoiding the stairs whenever possible. When I DO climb up the stairs, it takes several minutes for me to feel "normal" again. Climbing the stairs in your own home should not be this taxing on a person's strength...and yet, it is.
The weakness in my legs is also making it very hard to walk in general. The canes I bought for "occassional use" two years ago have now become everyday necessities. I can't even recall the last time I left the house without one. I can barely walk IN the house without one, most days.
The weakness isn't just in my legs, either. My arms, my hands, are also affected. Signing my name has suddenly become a Herculean test of strength. Brushing my hair makes my arms burn as if I've been practicing for a weight-lifting contest instead of just trying to make my hair look like it isn't the result of my putting a wet finger in a light socket. I no longer trust myself to carry hot food from the kitchen to the table (especially after the infamous Chicken Soup Burn Incident). I drop things constantly, and when I visit my goddaughter, I prefer to be seated when holding her. I've never dropped a baby in my life...and I'd like to keep it that way.
I am also finding that minor problems I have had for years are becoming major problems. I'm in the bathroom constantly (I've yet to respond well to a medication to control that). My muscle spasms have gotten so much worse that I've gone from taking one Baclofen a day (as I have for at least four years now) to taking three or four. The nerve pain and sensations are so much worse; the worst they've been since my awful trial on Neurontin (a long story for another day). Trying to fall asleep at night has become a little bit like waging war on my own body: will the pins-and-needles stop? Will the nerve sensations go away? Will my muscles start spasming as soon as I finally drift off to sleep? How many times will I wake up in pain, or needing to go to the bathroom...so I can do the whole rigamorale over again?
This is not like the R&R MS. It's like R&R MS, intensified.
All in all, I feel very much like an invalid lately...and that's something I am not used to. I am sleeping more and getting less out of it. The slightest bit of excertion leaving me in pain and reeling from fatigue.
I just have to wonder: am I feeling like this because it's summer and the MS is spanking me like a bitch, or am I feeling like this because this is what secondary-progressive feels like?
I wish I knew. I keep looking for the answers, and no one will tell me. The lack of information on secondary-progressive MS is astonishing. When I do a websearch, I get plenty of definitions on what it IS, but no real, useful information as to what I can expect or how to cope with it. Each site just keeps regurgitating the same story over and over: the percentage of people who get it, and it's a "progression with less or no relapses." Yeah, I get that. But what does that MEAN in my day-to-day life? On most sites, the only mention of it at all is in a breakdown of the various forms of multiple sclerosis. I know all of that already...what I don't know is: is how I am feeling normal? Is this what I need to expect? How do I know when it ISN'T normal? I keep hearing about going to the hospital for steriod treatments when it "gets too bad." Well, how do I know when it's "too bad"? What are the signs of needing to go into the hospital? What happens if I should have already gone, but I didn't know?
Let's take this one MS site, for example. This is the extent of the information they have on secondary-progressive MS:
Without treatment, Secondary-progressive MS, formerly called chronic progressive MS, develops within 10 years in about 50% of people who have had relapsing-remitting MS.
Some people with secondary-progressive MS have relapses, but many do not. In time, people with this condition experience a gradual and continuous increase in symptoms and disability.
Fifteen years after being diagnosed with Secondary-progressive MS, some people may require walking aids, such as a cane, and others may need use of a wheelchair.
This is typical of the information on the Web concerning secondary-progressive MS. How exactly does this information help me? The first paragraph is just statistics, meaningless when you've already been diagnosed with SP. The second paragraph is too vague to be of much use. And the third? I was ALREADY walking with a cane when I was diagnosed with SP! What does that mean for me?
That's basically what I'm finding online, folks. Statistics and vague definitions. And the stastics change from site to site, rendering them pretty much useless.
And so I turn to my support groups. These are usually incredible fonts of information: first-hand accounts of what it feels like to have MS and what may or may not help. I have learned so much from my groups over the years; they have been truly invaluable.
But now I find, that like the Internet, they have little to offer me in the way of practical information and advice. The vast majority of people in the groups have R&R MS. In most of my groups, I am the only person with secondary-progressive. If there ARE others in the groups with SP, they are choosing to remain silent about it for whatever reason...I post and I post, asking for info, and getting nothing. I'm not ignored. People respond, but it's with "sorry, I don't have the answers, I wish I did."
It's frustrating. I feel like I am running in the dark. I don't know where I am going and I'm not sure what direction to run in.
People who don't have MS are now advising me, "Ask your doctor." They mean well, and I politely thank them for their input. But honestly, do they think I've never thought of that on my own? That I haven't tried just that? Doctors are more vague than that website! I get the same "each case is different, so it's hard to tell how yours will progress" lecture I've been getting since I had R&R MS. Occassionally, a doctor will direct me to an MS website...which, as we know, tells me little to nothing. Or they'll hand me a pamphlet, which has the same info the website has.
So what now? I plan to go to Powell's soon and look for books. Maybe someone's written about this form of the disease, and that will help me. I'm thinking that looking at online bookstores for possible titles and so on wouldn't hurt, either. I just refuse to believe that there isn't some practical information, somewhere. Depending on where you get your statistics, anywhere from 25 to 50 percent of people with R&R MS will get SP. Surely, SOMEONE has written about it?
I hope so, earnestly. I hate running in the dark.